CADDAC would like to better inform the ADHD community about our on-going advocacy work across Canada so we will be keeping you up-dated on meetings and communication with government representatives and decision makers. We also hope that those of you interested in improving outcomes for those with ADHD will become inspired to contact your elected official. Only when we share your concerns as constituents about the lack of government awareness and commitment to families and individuals impacted by ADHD will change occur. If you are interested in learning more on how to approach your elected official, please access Become Involved or contact heidi.bernhardt@caddac.ca.
Communication with Ontario’s Ministry of Children, Community and Social Services
On May the 14th CADDAC wrote to Minister McLeod, the past Minister of Children, Community and Social Services, after the Ministry requested feedback from families of children with disabilities. On August the 12th, CADDAC received a letter of response from Todd Smith, the new Minister of MCCSS.
In summary,
View the letter in its entirety HERE
CADDAC felt that this reply letter opened up an opportunity for continued dialogue with the MCCSS as well as the other ministries listed above. The letter below was sent to Minister Smith on August the 15th.
Dear Minister Smith,
Thank you for your reply to my e-mail expressing our concerns about the lack of recognition of ADHD in the Ministries of Child and Youth, Education, and Health and Long Term Care. CADDAC would very much like to meet with each of these Ministries, preferably jointly if possible as arranged through your Ministry, or individually if necessary, to discuss the lack of focus on ADHD as the most common childhood neurodevelopmental and mental health disorder in Canada. Unfortunately at this time the three Ministries overseeing the improvement of the lives of these at risk and vulnerable children do not actively recognize ADHD as the significant educational and health risk that it is.
CADDAC and the Ontario ADHD families that we support would very much like to meet with you to discuss a working committee which would include representation from the three above mentioned ministries, CADDAC and medical and educational experts in the field to address these issues. Or, we would like representation on committees already developed looking at resources for children with neurodevelopmental/mental health disorders.
Regards,
Heidi Bernhardt, President CADDAC
The last time CADDAC posted on this topic was October of 2017 so we thought that it was long past time for some up-dates. Also, some new issues have arisen that may be of interest to you.
Bioequivalency
CADDAC met with Health Canada to share feedback on issues with some ADHD generics prior to their review of the bioequivalency guidelines. Health Canada completed their review of the bioequivalency guidelines in July of 2018. They realized that where multiphasic plasma concentration profiles were found to be integral to the products therapeutic effect their general standards may not be sufficient for some modified release products.
For this reason Health Canada made the standards for these products somewhat more stringent by aligning them with the EU approach. However, they did not align them with FDA standards which would have resulted in less variation of the generics that were approved. The new standards came into effect on September 1st 2018, but did not apply to medications already on the market.
Teva Methyphidate ERC
The Teva brand of long acting methylphenidate was recently discontinued, so in the future you will not be able to access this medication. This medication was not evaluated using the new Health Canada more stringent guidelines. CADDAC, as well as treating physicians, received feedback from patients and caregivers of decreased length of symptom control and increased side effects, compared to the brand medication since this medication was released.
ADHD Generic Medication Shortages
Also, issues of generic medication shortage and generic pharmacy preferences may still be causing issues for children and adults with ADHD. Did you know that when you fill your prescription you may be receiving a different generic medication every time? This will depend on which brand of generic medication is currently available and which generic medication your pharmacy chooses to stock and use to fill your prescription – understandably price may have something to do with this.
For some this may not be an issue, but since Health Canada standards for bioequivalency still allow for slight variations in generic medications you may notice a difference in effectiveness, length of duration of symptom control or the number and severity of side effects. Unless you ask to be notified or specifically look at the name of the medication on the bottle you won’t know when the brand of your generic has been switched.
For many people receiving these medications the differences will be subtle or non-existent; however for others who are be more sensitive to medication changes this could cause an issue. If you, or your child, are sensitive to changes in medication and are experiencing any of these issues you may wish to pay attention to changes in your generic medication.
If these fluctuations are effecting your functioning you may wish to look into receiving the brand medication through the free Innovicares CoPay assist card.
This is a follow-up on an earlier post that informed you that CADDAC and CADDRA sent a joint letter to Senator Munson and Minister Lebouthillier in early February of this year, stating that the Canada Revenue Agency (CRA) appears to be restricting access to the Disability Tax Credit (DTC) for those impaired by Attention Hyperactivity Deficit Disorder (ADHD) and other neurodevelopmental disorders (e.g. Autism).
In this letter CADDRA and CADDAC recommend that:
1.That the Disability Tax Credit be more easily accessible to significantly impaired individuals with ADHD and their families to assist in the immediate provision of evidence-based support and care, as well as the long-term support provided by the Registered Disability Savings Program (RDSP).
2. That the government recognizes and accepts the expertise of qualified health care practitioners who complete the Disability Tax Credit application for their patients.
3. That the Minister of Finance revises the Disability Tax Credit eligibility criteria so that impairments in problem solving, goal setting and judgment need not be present together to establish Disability Tax Credit eligibility and that a greater recognition of executive function deficits be acknowledged.
4. That a CADDRA representative be invited to sit on the Disability Advisory Committee.
Since that time CADDAC and CADDRA received responses from the Minister of National Revenue and a response from the Minister of Finance, Minister of National Revenue to the chair of the Senate Standing Committee on Social Affairs, Science and Technology acknowledging receipt of the letter and requesting recommendation be sent to the Disability Advisory Committee.
The full report from the Disability Advisory Committee has recently been released.
Access a summary of information pulled from the report that would be of interest to individuals and families affected by ADHD and professionals working in the field HERE
On May the 6th CADDAC posted on our blog and sent a mass mail out alerting those interested in ADHD about the BC Standing Committee of Children and Youth’s public consultation on the assessment and eligibility process of children and youth with neuro-diverse special needs.
There is a deadline of June 7th to submit written submissions, but there’s still a bit of time should you be interested.
On June the 4th the Select Standing Committee on Children and Youth held it’s fourth and final public consultation in Surrey BC. You can now access a draft of the transcript of this day’s meetings. (You can scroll through the transcript to isolate the stories on ADHD, however it should be noted that ADHD was also mentioned several times within presentations by school and mental health service providers.)
The meeting was opened by the chair, Nicholas Simon’s stating that the committee was undertaking a project, on children and youth with neurodiverse special needs, including those with autism, FASD and developmental delay. You will note that ADHD was not included in his list of neurodiversities although it has the highest incident rates. It was also not listed on the website page outlining the call for public consultations. This lack of inclusion of ADHD was mentioned by several of the presentations that occurred on that day and some stated that they had almost not attended due to this oversight, to which Mr. Simon responded that it was not their intent to exclude ADHD.
Mr. Simons the Chair of the committee explained their role as, “We're not a decision-making body. We're an all-party committee that is charged with improving our understanding of the child-serving system and making recommendations to improve those services, to inform the public and legislators about the child-serving system — child welfare, neurodiversity. That's our goal: to inform the people who make the decisions.”
For those of you who may not have the time to read the entire transcript I have selected quotes that cover most of the important points made by the presenters, parents and professionals, who spoke about ADHD.
Quotes
“I have a paper trail of assessments, reports, recordings and emails from various pediatricians, psychiatrists, mental health specialists, educators and school administrators that could probably stretch around a full city block at least one time.”
“Even though we were — the word I use is — armed with this level of professional medical support, my son was denied access to testing, supports and services in two different elementary schools, two different school districts and two different school-based resource teams.”
“My position is that ADHD is a neurological disorder that directly impacts a child's ability to learn at the same level as a neurotypical child. By classifying it as an R designation and trying to treat the traditional undesired behaviour that we associate with ADHD, we are not offering our children the same access to education. ADHD requires its very own special needs category within the Ministry of Education so that the necessary supports and one-on-one assistance can be made available to our children in the schools.”
“My experience with the letter of advocacy for our school and also the plan that was laid out for us was a lot of doors closing in our faces, because there just really was, at that time, no support services that were geared toward children who were diagnosed with ADHD. That was through the ministry of child and family services. We were denied access to Sunny Hill development services.”
Question by the Committee – “Would you say that, with ADHD, that your child did not get the support that children with autism got? Is this how you are feeling? Or, like, the school system is not equipped to deal with it?”
Response “I think, actually, both. I can be, oddly enough, quite diplomatic when we talk about this. I see two things. I see ADHD as something that falls under the category of an R designation, which speaks to moderate behavioural challenges in the classroom, whereas autism has a stand-alone category within the ministry of special needs. By having a stand-alone category in the Ministry of Education, special needs, it allows for supports to be put in place that directly speak to the needs of that child and the disorder and disability that they are experiencing. By classifying it as an R designation, they are very loosely attempting to protect the rights of the classroom, the learning environment and the child, but we're not speaking directly to the educational supports that are needed.”
“Those were some of the challenges with the assessment process. I know that's the focus of this, but I would like to just bring up a few other issues that exist around FASD and, really, ADHD. They go hand in hand; they're so similar. That would be that there's no funding. The big comparison that all families in this world see with ADHD and FASD is: how come families who have children with autism get funding, yet kids with FASD and ADHD don't?”
“But since he started kindergarten, I quickly discovered that ADHD children were not recognized as students with exceptional learning needs, and therefore they do not receive any extra support from the schools.”
“What was disappointing was that not once did the letter mention the word ADHD. You asked for our input on children and youth with neurodiverse needs but did not mention ADHD as an example. This lack of recognition from the governing bodies makes it impossible to get any supports from the local schools. So do parents of ADHD children feel that their child is given equal learning opportunities and access to other resources in schools? No. Not currently.”
”In fact, when I wrote a letter to my son's principal requesting support from the integration support teacher, since my child struggles with emotional and self-regulation needs, her response was this: “The integration support teacher, although often at support-based team meetings, case-manages and supports students with ministry designations.”
“If, as a society, we continue to ignore the needs of ADHD children in schools, we are going to have lower academic achievement with higher drop-out rates amongst ADHD youth. They are unlikely to obtain post-secondary education. They might not be able to hold down a job in their adulthood. They might suffer from depression, anxiety and substance abuse. They may take part in risky behaviours and get in trouble with the law.
We can change this by approaching ADHD as a neurological condition — which it is. Educators, schools, school districts and the Ministry of Education should approach this as special needs. Provide funding for children with ADHD. Provide proper and mandatory education to educators based on research-based studies and effective teaching strategies, accommodation and greater understanding of this neurological diagnosis.”
"No, there is no designation for ADHD," which means there is zero support. There's this discorrelation between yes, there's funding but not for kids with ADHD. No matter who I go to, they're like: "Contact your school district. Contact the local schools. Speak to the principal." But we do not get that. So the Ministry of Education, the governing body, says: "Yes, contact the local schools." No, because ADHD is not a designation from the ministry, we can't do anything. There is this disconnect.”
Comment by the Committee – “But we've heard from someone else that there was a designation within the school system for their ADHD child.”
Response – “If they are just diagnosed with ADHD, they don't get anything. It's not a designation. ADHD, in the current model, is not a designation.”
Question by the Committee – “So your child receives absolutely no special…?”
Response – “Nothing. Even if you request it, there isn't.”
Recommendations made by a parent – “Create a position of a caseload worker that specializes in neurodiversity and mental health in children to assist families in navigating the system so that the burden doesn't fall to the parents. This would be a go-to person, and this person would not be the social worker. Change the ministry's special needs categories to include ADHD. It's a neurodevelopmental disorder, like autism spectrum disorder, but currently doesn't qualify for extra funding.”
“When we look at the cost of untreated ADHD, which is a significant concern, it's one of the most debilitating disorders that somebody can experience. People with untreated ADHD are more likely to have depression and anxiety, more likely to fail a grade, more likely to fail to complete high school, more likely to have an unwanted pregnancy, to contract a sexually transmitted disease, to cause a car crash, to get divorced, to be incarcerated, to experience problematic substance use disorder and — although I haven't seen research about this — I am sure, more likely to be a victim of our overdose crisis.
The cost is huge to our society, never mind to individuals' families and the people who love them, of our inability or our unwillingness to deal with this very common condition. I ask you, as representatives of the government of British Columbia: how much research do we need to see and how much suffering do we need to see …love them, of our inability or our unwillingness to deal with this very common condition. I ask you as representatives of the government of British Columbia: how much research do we need to see and how much suffering do we need to see before we change these odds for children like mine?”
“We know that out of 12 ministry categories, ADHD is on the list, but it's part of the block funding. So families are often told there is no funding for ADHD, even though we know that it's part of the block funding. To access inclusive education, a student needs to be assessed, they need a diagnosis, they need to meet the criteria of one of the 12 ministry designations, and they need to have an IEP. So you can start to see the catch-22. How do you get the IEP when you aren't assessed? How do you get the assessment if you don't have the diagnosis? Unless you have a very proactive parent and supportive school system, a lot of people never get into this loop.”
“Students like my daughter, who has the ability to completely blow apart a classroom on a bad day, is a fairly high priority for services. Students who have the inattentive subtype of ADHD, who are quiet and daydreamy — these are more likely to be girls — are much more likely to fly under the radar, but they have just the same risk profile as any other kid with ADHD. I really worry about those children.”
“The Ministry of Education may provide assessment, may provide some supported education, does not provide behavioural interventions, support training or cognitive behavioural therapy. That's not their job. The Ministry of Health may provide the diagnosis, may provide the medication. With a very few exceptions in a few health regions, there are no services for children with ADHD. I hope nobody is telling you otherwise, because it's not true”.
Presentation by Vancouver Coastal Health – “Then the other piece is that it's often really inequitable. So if you wanted…. I don't know if you've had parents of kids with ADHD here, but ADHD can have profound functional impairment. So you have a kid, and they've got severe ADHD. They can't attend class. They're oppositional. There are huge behavioural problems. And basically, everyone has to pray that the diagnosis at the end is not ADHD because they're not going to have funding or support. Hopefully, you know, we'll just hope that it's something else, which is outrageous. It's not how diagnosis should be used. It leads to these huge inequities between who gets services and who doesn't. It's not based on function.”
“We've had the school look us point-blank in the face and be, like: "You need to go back to the pediatrician and tell them you need this diagnosis so she can get funding." I'm, like: "I'm a professional. I'm not a medical professional, but I guarantee you my doctor's not going to put this kid on the autism spectrum if that's not where she belongs."
“It's really just the opportunity to say…. You know, I have a friend whose child is on the autism spectrum. Quite frankly, my twin B's symptoms are far more significant than his symptoms are. We're entitled to nothing. I paid privately for an occupational therapy assessment for twin B. We pay privately for her to go to occupational therapy every two weeks for an hour a day. We pay privately for our girls to get clinical counselling to try and help them cope and learn behavioural strategies and do CBT.”
You can access all four meeting transcripts here.
Dear Mister MacLeod,
I am reaching out to you through this e-mail on behalf of the Centre for ADHD Awareness, Canada, or CADDAC. We represent countless Ontario families that we hear from daily, who struggle with the lack of recognition of ADHD and therefore services for this disability in Ontario. We applaud your Ministry for allowing families of children with other disabilities to also be heard.
Did you know that Attention Deficit Hyperactivity Disorder, or ADHD, was clinically observed more than 100 years ago, is a lifelong disorder and a significant risk to health, learning and employment. ADHD is the most common neurodevelopmental disorder occurring in children, with incident rates exceeding Autism and learning disabilities. But, children with ADHD who receive the proper treatment and support can grow into success contributing members of our Ontario society.
Untreated, or inadequately supported, ADHD leads to increased school dropout, increased unemployment and social services, increased physical and mental health issues including addiction and substance abuse and increased involvement with the justice system. ADHD incident rates in our correction systems are 5 fold for adults with ADHD and 10 fold for youth with ADHD. One third of Canadian inmates have ADHD despite the fact that we know that treating the disorder greatly reduces recidivism.
Although multimodal treatment for ADHD is recommended, all types of treatment, other than medication, including cognitive behaviour therapy and childhood behaviour therapy, are not covered by Ontario provincial health care.
Although
many of the learning and self-regulation impairments that students with ADHD
experience are very similar to those of students with Autism, ADHD is not
included in any of the Ontario special education categories of exceptionality.
This has resulted in many school boards using this as an excuse to not IPRC
students with ADHD leading to inadequate resources for students with ADHD. One
of our major asks of the Ontario government's Ministry of Education is that
ADHD be included in the categories of exceptionality. Since learning
disabilities, Austism and ADHD are all neurodevelopmental disorders that impair
learning, so it would only make sense to group these disorders together in one
category.
Similar to students with Autism many students with ADHD are also being excluded
from a full day of education in our Ontario school boards.
We very much want to be included in any stakeholder consultation on this issue
that is being initiated by your government.
We would very much like to meet with you to discuss these issues and the continued inequity of access of education and health resources faced by children and adults with ADHD in Ontario.
I look forward to hearing from you regarding possible meeting dates.
Sincerely,
Heidi Bernhardt
President / Executive Director CADDAC
Take advantage of this unique opportunity to have your voice heard by the Ontario Government on ADHD issues that affect your family. Minister Lisa McLeod, the Ontario Ministry of Children, Community and Social Services, recently informed the public that the Ontario Government is open to also hearing from families of children with other disabilities through the Autism Consultation process. ADHD has been listed as one of the diagnoses. In the month of May 2019, the Ontario Government is providing three ways for you to participate in this consultation process.
You can register to participate in one of three Town Halls, (access the link for dates and instructions) where you can participate live during a phone call. They are asking that you restrict your comments to 30 seconds. They are only allowing one hour for these town halls and warn that they may not have enough time to hear everyone in the queue. Staff from the Ministries of Children, Community and Social Services, Education and Health and Long-Term Care will be listening in during the sessions.
Another option is participation in a 20 minute online survey.
The third option is to write to them through
Email:
autismconsultations@ontario.ca
Or
mail:
Ontario Autism Consultations
Ministry of Children Community and Social Services
Communications Branch
7th Floor, 438 University Avenue
Toronto, Ontario, M7A 1N3
The deadline for a mailed submission to be posted and to participate in the survey is May 31, 2019.
The BC Standing Committee of Children and Youth is holding public consultations on the assessment and eligibility process of children and youth with neuro-diverse special needs.
CADDAC wanted to bring this to everyone's attention quickly since time is very limited and the voices of those interested in ADHD need to be heard. The deadline for all input is Friday, June 7, 2019 at 5:00 p.m. You will notice that ADHD is not even listed as an example which is quite concerning since ADHD is the most prevalent neurodevelopmental disorder seen in children.
This was just brought our attention by a parent who is presenting to the committee. If only a few people present on ADHD, children and youth with ADHD will again be ignored when government decisions are made. Unfortunately the committee is only looking for submissions by BC residents so CADDAC cannot send in a submission.
https://www.leg.bc.ca/parliamentary-business/committees/41stParliament-4thSession-cay
If you are interested in participating through a written, video, auditory submission or to speak at a public hearing please access, https://consultations.leg.bc.ca/Submission/Create?cons=ChildrenandYouthwithNeurodiverseSpecialNeeds
If you need their assistance, please contact the Parliamentary Committees Office at 250-356-2933 (toll-free in BC at 1-877-428-8337).
There are facts on ADHD and an abundance of ADHD information on our web site that can assist you with your submission, but if you would like CADDAC’s assistance in developing your submission please contact advocacy@caddac.ca
Warm regards,
Heidi Bernhardt
CADDAC encourages BC residents who are concerned about this issue to contact their MLA.
Up-coming proposed changes to the special education funding model in BC, away from a model of designation to a prevalence based, inclusion, model may benefit students with ADHD or cause continued inequities. Much will depend on the recognition of these vulnerable students’ needs moving forward.
Background
In the fall of 2016 the new BC Special Education Guidelines draft was shared with CADDAC. We were encouraged to see that ADHD was to be added under the category of Learning Disabilities. CADDAC was then informed in the spring of 2017 that students with ADHD were to be recognized in a stand-alone category. Either option was acceptable to CADDAC. Although these categories would not be tied to additional funding, it would at least be a step forward in recognizing that these students have a disability, causing impairments, resulting in serious learning risks.
However, with the change in government everything was put on hold. During a meeting with Minister Fleming on December 4th 2017 CADDAC, as reported in a previous blog, was assured by the Minister that the Ministry was not considering changes to these guidelines and that ADHD would not be removed as a category.
Current Situation
After an e-mail exchange requesting clarification on changes to the funding model at the end of 2018 a meeting occurred on January the 30th with Kim Horn, the Executive Director, Sector Resourcing & Service Delivery of the Ministry of Education. During this meeting CADDAC learned that due to the proposed changes to a prevalence funding model, the fate of all designation categories and the new Special Education Guidelines is unknown. Unfortunately the move away from the use of designation categories and these guidelines could also mean that the clear message that ADHD was a disorder that warranted additional supports and resources for students to be able to meet their potential as learners might be lost, again leaving these student’s needs unrecognized and under serviced.
Since students with ADHD were inadequately recognized and serviced in past funding and designation models, extra care must be taken during this transition to ensure that these students be better understood and recognised as students with special learning needs.
CADDAC shared our concerns during the call and were invited to submit a paper outlining our concerns and recommendation to the Implementation Coordination Committee of the K12 Funding Review Committee.
Access CADDAC's submission Here
CADDAC’s ASK to the Ministry of BC Education
CADDAC requests that in the process of moving forward with the prevalence based funding model and the inclusion system of special education the BC Ministry of Education ensure that students with ADHD will receive equitable access to education by:
Summary
With the implementation of changes to the funding and education system the BC the Ministry of Education is in a position to put policies in place that will ensure that students with ADHD receive equitable access to education and have the right to reach their academic potential.
If you have questions or would like to discuss any of these issues or suggestions please contact Heidi Bernhardt at heidi.bernhardt@caddac.ca.
About 75 people attended the live show featuring Patrick McKenna on Saturday night and if the laughter and tears was any indication everyone had a great time. Interestingly about two thirds of the audience were not conference attendees, which was unexpected but great bonus because it meant that we were reaching even more people in nova Scotia. The improve group was a blast. People were in stitches. I laughed so hard tears were running down my face. Patrick’s featured presentation “Is it me or the ADHD?” was inspirational and obviously hit home for many of the attendees. There was much nodding and also some tears in the audience. A young man pulled us aside at the end saying he wished he could stay and chat with Patrick but had to head out. He shared that he and his Dad attended with his Mom's insistence, so he was not too happy about attending. But, after hearing Patrick speak, so much had resonated with him that he now knew that he needed to think long and hard about getting an assessment making some serious changes. I guess we can’t ask for more of an impact than that!
Heidi Bernhardt
We get it! Sharing a video of yourself talking about ADHD on ADHD Speaks is scary!
Many parents who talk to us at length, sharing their frustrations and heartaches, are afraid to speak out about ADHD in public. They have let us know that while they would love to share their stories online they are concerned about their child who just wants to stay under the radar. This is totally understandable. Kids with ADHD get centered out far too often and not for their successes – most often just because they have ADHD. So who would want to make their child the poster child for ADHD.
We have a solution!
Be as creative as you like! We want your stories anyway you want to share them!
The long term goal is that eventually everyone will feel comfortable talking about ADHD, but as parents and grandparents of kids with ADHD and adults with ADHD we understand that speaking up about ADHD is scary.
"ADHD Speaks" is a marathon and not a sprint. CADDAC understands that it will take time to make this happen and we want to let you know that we are in this for the long haul.
CADDAC is committed to changing the understanding and perception of ADHD.
We hope you’ll join us on this journey in any way that makes you feel comfortable!
